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  • 2 months later...
Guest guest

Very well said, Jeanette. Keep up the good work. Laurie

>

> Hi everyone, It seams to me that we all have the same problem with

staff shortages in hospitals. It is just the same here in the UK my

daughter is a pediatric staff nurse in a trama unit. The other day

she phoned me up quite upset because she thought that she could not

give the correct amount of care to her patients that she should due

to the lack of staff. Before I found my specialist I was told many

times that my disease was in my mind and rushed to get out quick,

Thank God I now have a great specialist and hospital and I will not

do anything without their knowledge.

>

> Just to let everyone know who so kindly asked how I am now

yesterday I managed to get out of the house with out using my

wheelchair it felt so good but come the evening I was exhausted.

>

> I went to church last night and said a silent prayer for everyone

and sent out lots of love to you all. Jeanette UK AIH dx 1998

Cirrhosis dx 2001.

>

> PS Does any of this letter make sense to anyone My brain and body

are not working to well today. Big Hugs

>

>

>

> ---------------------------------

>

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Jeanette,

Congratulations on getting out of the house without a wheelchair, Good for you!

The exaustion I can relate to. After the first transplant surgery I seemed to be recovering my energy, but then I had the second surgery 8 weeks later (April1998) and it was September before I didn't live back and forth from the hospital. It was then almost a year before I had normal energy back. It did come back.

The reason I tell you this is the exaustion, for me, was frustrating but took a really long time to get over. You have been through alot and I would not be surprised if it takes a long time. Hang in there, I am really in awe of the progress you've made and that you are still making it is inspiring.

Keep it up!

Patty (Miami)

-----Original Message-----From: Jeanette Carpenter [mailto:jeanette_cuk@...]Sent: Sunday, March 24, 2002 7:54 AM Subject: [ ] Hospitals

Hi everyone, It seams to me that we all have the same problem with staff shortages in hospitals. It is just the same here in the UK my daughter is a pediatric staff nurse in a trama unit. The other day she phoned me up quite upset because she thought that she could not give the correct amount of care to her patients that she should due to the lack of staff. Before I found my specialist I was told many times that my disease was in my mind and rushed to get out quick, Thank God I now have a great specialist and hospital and I will not do anything without their knowledge.

Just to let everyone know who so kindly asked how I am now yesterday I managed to get out of the house with out using my wheelchair it felt so good but come the evening I was exhausted.

I went to church last night and said a silent prayer for everyone and sent out lots of love to you all. Jeanette UK AIH dx 1998 Cirrhosis dx 2001.

PS Does any of this letter make sense to anyone My brain and body are not working to well today. Big Hugs

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  • 1 year later...

, I work in a hospital too and I know what you mean. I have seen

thing and heard things that are unbelievable. One floor I worked on was so so

horrible. It was more like a nursing home than a hospital floor. No one cared

about the patients, everyone was so burnt out. It is very sad.

Bambi

Re: whooping cough test

yes, I LOATH the hospitals and doctors offices...physicians don't even know

how the immune system works, so instead of trying find ways to work with it,

they make all this outrageous guesswork. A friend is a nurse in the ER and

he said he's surprised there aren't more law suits on the hospital. Another

friend moved here several years ago and got himself moved from the ER to

another clinic. He had enough exposure to patients coming in and leaving in

body bags. Sounds like a fabricated horror story....BUT IT'S REALITY!!!

Kimberley

.... HE SAID he did not have Whooping Cough because it had been nearly

eradicated!!! (Guess he has not seen the news reports on the outbreaks) The

Dr said, he has what they call a bad cold that won't go away!! I was

steaming! I have 4 kids one of which is 4 weeks old. Anyway, I wanted to

share again, while I was level headed. I am seeing why so many of you are

choosing homeopathy!

> Have a great day :) :) :) :) :) :) :)

> Bambi

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  • 6 years later...

When I first went to U of Mich., I would wait for my appointment in a rather

large, but not to be compared with MDACC, waiting room. Then vitals, then taken

to an examining room and pray Dr. Talpaz did not have an emergency.  But since I

have been in the Ariad trial, they have a different procedure.  I get labs done

first, on the first floor and go to another floor to  check in and a nurse comes

for me and takes me to a large room called Phase 1.

There are  at least 4-5 nurses there, it is for trials only, and there are 6

recliner chairs, with curtains if necessary.  Everything is done here, vitals,

ekg's Dr. visit, meds, and when necessary another blood draw for the trial. Dr.

Talpaz is almost always there, waiting,  as is the trial nurse.  Unless it's a

holiday week, we are usually in and out in 2 hours. I love it, you get to know

the other patients, as well as the nurses, who are usually the same all the

time. U of Mich is less than a 3 hr. drive for me, as compared to having to fly

to Houston, and worse, fly to Portland, Oregon.

As good as MDACC is, if I had to choose between OHSU and MDACC, i would take

OHSU hands down.  Mostly because it is smaller and is so right, you get to

spend a lot of time with your doctor.  I love Portland, it is one of the most

beautiful cities and there is so much to do and see there.  I had to live there

for 2 months, in 3 different trials, and it sure is nice to have something to do

if you're alone and stuck in a strange city.

But that was then and this is now and  Ann Arbor, and the U of Mich and the

wonderful Dr.Talpaz are my life. As of Feb. 2000 I have been given an extra 10

good years thanks to Dr. Druker and Dr. Talpaz,  my heroes.  

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

o2/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

#840 Zavie's Zero Club

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  • 8 months later...

Change yiur BC pill. I tried 3 before I found the ones I could tolerate.

Or you're sick with a stomach bug.

Could u be preggy?

NOT a SMA thing. a WOMAN thing! J

Hope u get better soon!

In Hope,

Maggie ( " Meg " ) W.

From: [mailto: ] On

Behalf Of Nichole M

Sent: Monday, October 11, 2010 7:21 AM

Subject: Hospitals

Hey guys, it's Cortney again.

I recently went to the E.R the other day for nausea and abdominal pain. They

did a whole lot of test only to tell me I had cysts on my ovaries. Which I'm

glad they caught that and all they did was put me on birth control and send

me on my merry way. I'm still hella nauseous and wake up this way every

morning. I'm constantly throwing up and I never feel hungry. My only fear is

that somehow this ties into my SMA type II. I don't have the problems with

gaining weight I have a decent upper body strength. I dunno anymore... any

advice???

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Hi Nichole,

I'm prone to ovarian cysts. It is not related to SMA. It sounds like the doctor

did the right thing if it really is a cyst. To alleviate some of the pain you

can place a warm pack on your abdomen and drink herbal teas. You can also ask

the doctor for a pain reliever, but I've experienced relief with most OTC drugs

such as ibuprofen or tylenol. Ovarian cysts are normal for young women and most

are harmless. They may develop around your menstrual cycle and pass on their

own. If they do not pass, you should see the doctor again. Some cysts require a

surgical procedure to remove before they become infected. You'll probably notice

the cysts not develop after a few months.

<3Kendra

>

> Hey guys, it's Cortney again.

> I recently went to the E.R the other day for nausea and abdominal pain. They

did a whole lot of test only to tell me I had cysts on my ovaries. Which I'm

glad they caught that and all they did was put me on birth control and send me

on my merry way. I'm still hella nauseous and wake up this way every morning.

I'm constantly throwing up and I never feel hungry. My only fear is that somehow

this ties into my SMA type II. I don't have the problems with gaining weight I

have a decent upper body strength. I dunno anymore... any advice???

>

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I have SMA II and I've had polycystic ovarian syndrome

I don't know if there's any connection with PCOS & SMA ?....

>

> Hey guys, it's Cortney again.

> I recently went to the E.R the other day for nausea and abdominal pain. They

did a whole lot of test only to tell me I had cysts on my ovaries. Which I'm

glad they caught that and all they did was put me on birth control and send me

on my merry way. I'm still hella nauseous and wake up this way every morning.

I'm constantly throwing up and I never feel hungry. My only fear is that somehow

this ties into my SMA type II. I don't have the problems with gaining weight I

have a decent upper body strength. I dunno anymore... any advice???

>

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FYI to all

You can't be 'preggie' and have ovarian cysts at the same time

An ultrasound to diagnose ovarian cysts would've found a pregnancy if that was

the iissue going on

Pregnancy is actually harder to achieve while having ovarian cysts

The pain from a stomach bug is completely different from ovary pain

Although a stomach issue can cause nausea and upset stomach, unless fevers are

happening, it's not an infection

Birth control pills can cause nausea at first while getting used to them

Most ovarian cysts never need surgery

>

> Change yiur BC pill. I tried 3 before I found the ones I could tolerate.

>

>

>

> Or you're sick with a stomach bug.

>

>

>

> Could u be preggy?

>

>

>

> NOT a SMA thing. a WOMAN thing! J

>

>

>

> Hope u get better soon!

>

>

>

> In Hope,

>

> Maggie ( " Meg " ) W.

>

>

>

> From: [mailto: ] On

> Behalf Of Nichole M

> Sent: Monday, October 11, 2010 7:21 AM

>

> Subject: Hospitals

>

>

>

>

>

> Hey guys, it's Cortney again.

> I recently went to the E.R the other day for nausea and abdominal pain. They

> did a whole lot of test only to tell me I had cysts on my ovaries. Which I'm

> glad they caught that and all they did was put me on birth control and send

> me on my merry way. I'm still hella nauseous and wake up this way every

> morning. I'm constantly throwing up and I never feel hungry. My only fear is

> that somehow this ties into my SMA type II. I don't have the problems with

> gaining weight I have a decent upper body strength. I dunno anymore... any

> advice???

>

>

>

>

>

>

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PS- I speak from 21 years experience on this

> >

> > Change yiur BC pill. I tried 3 before I found the ones I could tolerate.

> >

> >

> >

> > Or you're sick with a stomach bug.

> >

> >

> >

> > Could u be preggy?

> >

> >

> >

> > NOT a SMA thing. a WOMAN thing! J

> >

> >

> >

> > Hope u get better soon!

> >

> >

> >

> > In Hope,

> >

> > Maggie ( " Meg " ) W.

> >

> >

> >

> > From: [mailto: ] On

> > Behalf Of Nichole M

> > Sent: Monday, October 11, 2010 7:21 AM

> >

> > Subject: Hospitals

> >

> >

> >

> >

> >

> > Hey guys, it's Cortney again.

> > I recently went to the E.R the other day for nausea and abdominal pain. They

> > did a whole lot of test only to tell me I had cysts on my ovaries. Which I'm

> > glad they caught that and all they did was put me on birth control and send

> > me on my merry way. I'm still hella nauseous and wake up this way every

> > morning. I'm constantly throwing up and I never feel hungry. My only fear is

> > that somehow this ties into my SMA type II. I don't have the problems with

> > gaining weight I have a decent upper body strength. I dunno anymore... any

> > advice???

> >

> >

> >

> >

> >

> >

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³You can't be 'preggie' and have ovarian cysts at the same time.......

Pregnancy is actually harder to achieve while having ovarian cysts²

Just to clarify, Anita, is it impossible to get pregnant with an ovarian

cyst, or just improbable?

~Tyler

On 10/11/10 9:36 PM, " charmedcripchic " <charmedcripchic@...> wrote:

>

>

>

>

>

> PS- I speak from 21 years experience on this

>

>

>>> > >

>>> > > Change yiur BC pill. I tried 3 before I found the ones I could

>>> tolerate.

>>> > >

>>> > >

>>> > >

>>> > > Or you're sick with a stomach bug.

>>> > >

>>> > >

>>> > >

>>> > > Could u be preggy?

>>> > >

>>> > >

>>> > >

>>> > > NOT a SMA thing. a WOMAN thing! J

>>> > >

>>> > >

>>> > >

>>> > > Hope u get better soon!

>>> > >

>>> > >

>>> > >

>>> > > In Hope,

>>> > >

>>> > > Maggie ( " Meg " ) W.

>>> > >

>>> > >

>>> > >

>>> > > From: <mailto:%40>

>>> [mailto: <mailto:%40> ]

On

>>> > > Behalf Of Nichole M

>>> > > Sent: Monday, October 11, 2010 7:21 AM

>>> > > <mailto:%40>

>>> > > Subject: Hospitals

>>> > >

>>> > >

>>> > >

>>> > >

>>> > >

>>> > > Hey guys, it's Cortney again.

>>> > > I recently went to the E.R the other day for nausea and abdominal pain.

>>> They

>>> > > did a whole lot of test only to tell me I had cysts on my ovaries. Which

I'm

>>> > > glad they caught that and all they did was put me on birth control and

>>> send

>>> > > me on my merry way. I'm still hella nauseous and wake up this way every

>>> > > morning. I'm constantly throwing up and I never feel hungry. My only

>>> fear is

>>> > > that somehow this ties into my SMA type II. I don't have the problems

>>> with

>>> > > gaining weight I have a decent upper body strength. I dunno anymore...

any

>>> > > advice???

>>> > >

>>> > >

>>> > >

>>> > >

>>> > >

>>> > >

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